Tuesday, June 21, 2011

The monthly Costco Connection magazine was left in my lobby recently, and on a quiet day I glanced through it. It featured an article asking whether or not patients should seek medical information online.

Comically, they decided to get pro and con opinions from 2 individuals- NEITHER OF WHOM IS A MEDICAL DOCTOR!

Really. The 2 experts they quoted were Dave deBronkert, who's a "voluntary co-chair for the Society for Participatory Medicine" and Judy Segal, who's an English professor at the University of British Columbia.

Now, I have nothing against either of them. I mean, they are both obviously intelligent, highly educated individuals. But I think it's pretty damn funny that the writer didn't feel it was worthwhile to, say, ask a medical doctor.*

So, Costco mag, here's my 2 cents worth.

First of all, this question is moot. Like atomic energy, cloning, and stem cells, this genie ain't going back in the bottle. People already DO look stuff up online, and unless the internet completely crashes, will continue to do so.

Second: I suppose most of you are expecting me to be adamantly against my patients looking up stuff. But ya know what? I'm not.

Most patients actually DO benefit from learning more about their diseases online. At least half of what I tell them in the office won't get absorbed anyhow. And I don't have the space to keep a million little "Living with Schnorkfloodle's Syndrome" pamphlets lying around. So I refer them to what I consider to be reputable websites (not BigPhilsguidetoParkinsonsDiseaseandroofingmaterials.com).

But there are also the cyberchondriacs. They type a few symptoms into Google, and voila! They are now convinced they have whatever got the most hits (for neurology purposes, I'd estimate that 90% of search engines lead to a self-diagnosis of MS).

It's this group that drives me nuts. They want me to prescribe treatments that are only available somewhere far away (like Senegal). Or they bring in a HUGE stack of information written by a Holostic Reflexologist on a site that has absolutely no valuable medical info at all (but because it has nice graphics it MUST be true). Or they want me to magically enroll them in some study being done in another state that I have absolutely no connection to.

This is where the real problem starts. People who don't have medical knowledge make the scary leap from symptoms, sometime quite vague, to fixating on whatever the internet says they MUST have. Medicine is a process of collecting data from several angles and working out probabilities. If you don't have the training to do that, the information in front of you can be terrifying. Not only that, most people don't understand the difference between various phases of drug trials, so a treatment that's in development suddenly becomes one they think is available.

And here's what really grates me: if these people need a car fixed, they'll do a shitload of research to find a reputable place. They wouldn't dare just grab some random stranger and ask them to repair it. But when they have a health issue they'll take the word of a pet mausoleum architect with a nice internet site over that of a reputable, trained, medical professional.

So here's the take of an uninformed yak herder pretending to be a neurologist: Is it okay for patients to learn about their health issues on the internet? Of course!

As in everything else, though, it depends on the source of the info, the person reading it, and what they do with it.

Let the buyer beware...

*I'm sure I'll hear from those of you who believe this is because we docs are secretly conspiring against you as part of some giant medico-pharma fiendish plot, and therefore can't be trusted.

69 comments:

Anonymous
said...

I did research after the surgeon cut a bit out of my finger because all the docs said was it was a 'granuloma'. Looking it up was scary but I was able narrowed down the search to what I really had because i know it wasn't cancerous (from the docs). It probably didn't help that I worked in the hospital so they probably assumed I had medical knowledge. lol (I work for corporate).

you just described my Dad to a T.He would go to the Dr,then happily come home and ignore all the Dr's advice for something somebody he met playing cards told him,or something he read in a book.He'd say"well this guy wrote a book,my Dr never got a book published"Hell,Edgar Allen Poe wrote books but I wouldn't take medical advice from him.Used to drive me nuts.I miss him.

Doc, I tried to visit Big Phil's website since I'm re-roofing my house and have always wanted to know more about Parkinson's but his site seems to be down. Do you have Big Phil's number, can you call him and ask him what's going on?

In our rush to become a truly egalitarian society we decided that the opinion of each of us is as valid as the rest.As we thereby sink into the abyss of the lowest common denominator I can merely inquire:Are there any openings at the Yak herders' union?flyrvenu

Dr. Grumpy,I have to agree with you on this one, except that I have not done much, if any research on my illnesses on line.

There are two reasons that I don't:First, I don't know which ones are credible. In my own line of work, most sites are promoting their products, or those of their advertisers, even when I know from experience that the items are junk.

The second reason is that I expect that my physician, when I have one, will know enough about people with conditions similar to mine to be able to assist me in controlling the problems.In other words, I TRUST my doctor's judgement.

My former doctor and I agreed when I started seeing him that I wouldn't try to treat my conditions except as we discussed at my appointments, and that he wouldn't try to design spacecraft structures.

Dr: You need a knee replacement.5 years agoMIL: I will think about it.MIL's Friend: I had it done, it was bad, you need rehab and help for 4 months.MIL: I will skip knee replacement.(4 years later-she can no longer walk)ME: You should of had it done, I can no longer lift you when you fall, put you in wheel chair, tub,car cause my knees are aching, not to mention my back..MIL: Whatever you do don't have knee replacement.Lay advice worst of the lot.

For a while, I stopped looking things up online because no matter what you have -- from an ingrown toenail to brain cancer -- somebody will have an absolute horror story about it and if you're a bit of a hypochondriac like I am, you think the worst. I also learned this from looking at psych boards, especially in regards to medication side effects. But then, as my psychiatrist said to me, "you don't want to pay attention to those people, they're nuts!"

After reading about somebody with a sebaceous cyst who had to have half their ass cut off (or is that the Old Lady in Candide?) I gave it up. Now I only go to reputable sites like the Merck Manual or the CDC, not Wikipedia or BigPhils.

I had a doc call me a few months ago for a consult (I'm a clinical biochemist) regarding the analysis of a "new drug" a cancer patient wanted to buy from Cuba based on wonderful internet sites that promote the "blue scorption venom" as a cancer cure. You wouldn't believe the amount of money that poor desperate women was going to pour into that thing, instead of following the normal course of treatment. The doc then came back to me saying that "apparently that treatment is safe to be used with all the treatments I'm going to give her so no problem"... The internet is a bottomless well of quackery.

The problem is always the same though, be it for consumer products or medicine: people are most likely to trust first-hand accounts from folks they know, even if a million people/studies out there state otherwise. Personal touch vs. competence from physicians that may sometimes seem detached...

I have to tell you that I 100% agree. My Dad is a PA in the USAF, and he always complains about the people who come in and insist that they have a certain disease because they read up about it and its symptoms on WebMD. Ignore the advice and training of doctors and other medical personnel, and listen to the advice of a faceless website. Sigh. Not a great idea.

Now, I will say that I tend to do research on diseases, conditions, etc before I go to the doctor, just so that I can have an idea on what to expect. But if the doctor says to me, "No, that doesn't really fit your situation." I remember that they have quite a few years of education and experience that should give their opinion much more weight than my research. But oh well. Not everyone thinks like that, I suppose. :/

I work peds. I agree with what you are saying about it being beneficial for general info but HATE it when some frantic Mom pushes the call light and I answer to a hysterical Mom. "Aunt Sally called and she was on Google and it says XXXX - she says my baby may die!" Every time it is on a stable patient expected to be discharged within a few hours. Aunt Sally is a PITA.

Part of what's bad about Doctor Google is that most American health-related sites are extremely alarmist. I started restricting my searches to nhs.uk and I find the information to be a lot calmer and a lot more useful. The treatments they list are ones that are actually likely to be available and if it's something that tends to go away on it's own, they also mention that.

I think it's the absence of profit motive. They're not trying to sell anything. They want people who may become more ill (and thus more expensive) to come in for help and people who are or shortly will be fine to stay home.

I wouldn't have believed you re: the MS thing until I gave a talk to a bunch of MS patients about a month ago and when it came time for questions, everyone asked me about gluten, the food industry conspiracy and about oddball physical therapy techniques.

Only about 2 of the 6 questions I got were actually related to the topic and one got so personal, the moderator stopped it.

Part of my suspicion of doctors is because I know so many people who turned out to have exactly what their internet research told them they had, but got held up from treatment for years because the doctors were so insistent on "we're the doctors, we know best" that they refused to so much as consider that their treatments weren't working and maybe the patient knew something. Funny, as soon as they found a doctor who listened and tested for what the internet research said they had, that test came back positive and the treatment for it worked...

So yes, sometimes I'm more likely to believe the internet research than the doctor. I know a lot of people with chronic illnesses, and very few whose doctors were right.

My sister-in-law is one of those fervent internet researchers, she makes me nuts! She self-diagnosed as having scleroderma in the wee hours of the morning on Thanksgiving a few years ago and made everyone miserable because she was a crying mess and only wanted to talk about what she found on the internet and how convinced she was that she indeed had scleroderma. Uncle Pharmacist tried to talk some sense into her about looking up stuff on the internet with caution and waiting for a clinical diagnosis from her MD but she wasn't having it. To this day, there has been no dx of scleroderma.

Ara: It's far more likely that you know dozens of people-- or hundreds-- who have correct diagnoses from their doctors. You just don't hear from that vast majority because they aren't vocally complaining on the Internet.

Only the outliers and the most dramatic mistakes wind up being talked about.

This is similar to the reason no one will ever write a news story about millions of drivers commuting without incident, even though there are national headlines when some famous jackass drunk-drives his Porsche into a tree at 111 MPH.

I think those sites are useful if you take what you read with a grain of salt. According to the internet I have brain tumours, a stroke, autism, liver disease, lymphoma plus a bunch of other things I'm dying from.I did however use the internet to help push to get me on the right path for getting a diagnosis of occipital lobe epilepsy- too bad my family doctor kept blaming a neurological disorder I had a a child and a neuropthamologist told me "nah, that's too rare" when I suggested it. A few years, a couple of grand mal seizures and a new family doctor later, I was sent to a neurologist who said I had a fairly classic case of occipital lobe epilepsy. Why couldn't you just send me to a neurologist to begin with!? Instead I kept getting sent to eye specialists who . . . kept finding nothing, other than a sluggish pupil.I'm not going to call up my doctor crying because the internet told me I'm dying, but it can be useful when used with a dose of sanity on hand. Too bad that's harder to come by than doctors around here.Beautiful yak by the way.

As a pharmacist, I also see many people diagnosed by Dr. Oz and Dr. Oprah! Anytime we have a bunch of people suddenly coming in all on the same day looking for something weird, you can be sure that it is something that was on Oprah the day before as the cure for the latest and greatest disease-that-you-surely-have-that-your-doctor-just-doesn't-know-about-but-sure-explains-your-symptoms-of-stress-fatigue-and-obesity.

I think what amazes me about that article is that they went to the trouble to find someone with sterling credentials...if you have a question about English literature. I realize PhDs are called "doctor," but there is a difference....

I've been haunting the forums on What to Expect lately (having a baby soon) and I've noticed the same behavior to what seems like an extreme among the expectant moms. Any OB that recommends an induction or c-section is automatically evil that just wants to do it so he can make sure to make his tee time. "That baby will come when it's ready - don't listen to your doctor." But the great ones are when a doctor recommends something and they turn around and post on the boards asking for advice as to what to really do...because I would so trust some random strangers on the messageboards as opposed to my doctor with 25 years experience delivering babies. Oh yes - and vaccines are poison...the CDC has no proof they do any good and are trying to make your kid autistic so that doctors can get more kickbacks from pharmaceutical companies.

While I am in no way shape or form a Doctor who went thru 8+ years of medical school, I am however a Licensed Massage Therapist and a Reflexologist who has seen some medical concerns confirmed through the practice of Reflexology. So while no we're not doctors nor can we diagnose, we can certainly assess and uncover some pretty valuable clues that some doctors can miss in an assessment. My own mom was finally diagnosed by her doctor with Hypothyroidism thanks to her LMT that had done quite a few Reflexology sessions and felt the changes that were happening in her feet where the Thyroid point is located.It's pretty amazing how we can find some medically relevant info just through listening to the body through our hands.

My long-deceased neighbor was a "Naturopathic Doctor" who treated scads of the unwary with vitamins and mumbo-jumbo ("You've got the Pancreas, it's going around")One fine day I sliced my hand open while doing something stupid involving some hose and a razor blade.Went knocking on his door for some gauze and tape to hold it together while I drove myself to the ER for stitches.He gave me a used handkerchief."Doctor", my ass.

Hate to date myself but does anyone else remember the Reader's Digest "disease of the month".

All(most)allways a happy outcome story about someone who was finally diagnosed with a semi-rare condition.

The letters to editor would sometimes have a "thank you for saving my life, I showed the article to my MD and..." item.

They did cover some common conditions those probably resulted in some early diagnoses of colon caner etc.----------------As to Dr Google I have on occasion asked a Dr. about an article that seemed relevant to a condition.

A quick "what do you think of this theory/possibility" works well: either there is a simple/logical reason why not or on occasion it has led to a new approach.

As a patient, I do like to learn more about the conditions that affect me, and I use the internet as well as pamphlets and other materials from the doctors and pharmacy. I have a tremendous respect for the providers who have years of training and experience, while also recognizing the limited communication among them regarding the same patient (at times), as well as the very limited time with a given patient. Typically, when I suspect something is up, I’ll research the symptoms online. If I think it is warranted, I’ll mention it to my primary doc at the next visit; but I don’t walk in with a self-diagnosis and ask for treatment. I’ll present him with the symptoms I’ve been having, tell him where I looked, and ask if it would be worth considering that it might be “mayoclinicitis”. I appreciate that he takes me seriously and will often grab a reference manual and verify.

Then, there are certain relatives who watch an infomercial in the middle of the night, decide all of their complex health problems are firmly rooted in the condition advertised, and wonder if they shouldn’t just chuck all the meds and just take this “Dr.-flavo-juice” instead. It sure is a lot cheaper than all those rip-off drugs prescribed by those money grubbing doctors (cardiologist, internist, gastroenterologist, nephrologist, urologist, neurologist, pulmonologist). Certain relatives also wonder why they keep ending up in the hospital every few weeks.

People need to check out the source of a webspace. So many people swear by Wikipedia when in fact, anyone can place an article there. I have a degree in history and minor in library science and I could place an article there on raising monkeys in outspace!

I especially enjoy the folks who read about the miracle cures on the internet or see the full page ads in USA Today, and assume the local grocery store pharmacy must carry these. No, we do not sell yak juice or cactus powder to alleviate your arthritis.

I'm one of those annoying patients who A) grew up around docs and, B) was a nursing student (before I changed majors) oh, and C) has worked in numerous medical settings. While I'm a huge believer in being an informed patient and my own best advocate, I will not tell my doc how to do his/her job - even when it takes almost 4 years to get the correct dx and results in some fairly significant spinal damage (hey, I didn't have a clue I had X, why should they?!)That being said, I have fired docs for lack of full disclosure, shitty attitude, and crappy office staff - and was clear as to why they were 'going bye-bye'... other than that, I'll plant myself firmly in the "do you think it could be Y, doc?" camp - when doc says no, I drop it and go on merrily with my life. Theres a reason the world is the way it is -- people are crazy! ;)Verification: cones - on the first day it's been hot enough for my kids to keep asking for one! =D

Actually there's nothing wrong with wikipedia...That was how I studied for in my medikology school. Now I'm a medikology intern. When my attending asks me to look something up, pubmed is just a conspiracy by the man to supplant and bring down the truth. The truth that viagra was created to by the military to help have a constant assembly line reproduction of elite soldiers. Hey don't take my word for it, check with wiki.Sincerely,Dr. Grumbly, Medikologist, AAMAAU (American Academy of the medickological Association of the Universe)

I witnessed someone who jumped to conclusions in my EMT class over a medical symptom. The paramedic was going over signs of hypoglycemia with us and the proper EMT procedures for dealing with it. And wouldn't ya know it, a fellow student diagnosed himself right there with hypoglycemia since he had one symptom associated with it. Nice...

I'm glad you're not totally against it...I found out who wasn't when I tried to log in to PubMed from the for-patients wireless network at the hospital and discovered it was completely blocked!! I guess they didn't want us checking anything they said against the literature.

Totally agree. I'm on some boards for my particular illness and I get the biggest laugh out of some of the people who wake up with stiff necks and assume that the are now dying because the internet said that could be a symptom of something really horrifying! They are so used to finding something medically wrong with everything they can't see it as just having slept funny.

Trying to convince another lady that her doc is probably right that her leg muscle weakness is due to under use and not some horrible disease and she needs to MOVE A LITTLE. gah.

On the other hand, I've learned an awful lot about different types of headaches on the internet to be able to tell my neuro more specifically what is going on and where than just "my head still hurts." And to know when I need to call her in between visits because something really scary is going on or if it is just something odd and can wait.

As a vet I gotta say, how come nobody ever brings in a nice yak like that to see me?

When people bring in new puppies and kittens, part of the first visit is now "When you go online to look something up, and you inevitably will, please go to a site that is reviewed by vets, like veterinarypartner.com."

It helps limit the number of diagnoses (with treatment and medication recommendations) by way of the kid at the feed store or the neighbor who saw a show on TV.

See, the problem I have is that (since I'm in med school) the doctors expect me to have read up on my illness before I come in, and then ask me what I think I should do. AHHHHHHHHH!!!!!!!!! On the other hand, I think I prefer it this way, since things seem to get overlooked if I don't micromanage.

Family calls me "Internet M.D." Just because I like to read things for the heck of it. I don't go running into the Dr. for every little thing though. After major surgery last fall though, just reading up on the different things done to me, helped. I read it all, this and that - peer reviewed journal articles, stuff from the specialty's accredited and recognized organization... anyway, the information for me is reassuring and informative, but will never take the place of the advice from a Dr. that I know and trust.

But the more knowledge for me, the better. I always research drugs I am prescribed to make sure I take them correctly and they don't interact with other drugs.

Speaking on behalf of myself and the literally tens of Schnorkfloodle's Syndrome sufferers worldwide, if we'd had access to the pamphlets you mentioned, we may have avoided partaking of the African Tumba flower (discovered by Irwin L. Schnorkfloodle) that led to our disease.

As a pain-in-the-butt patient, I am laughing so hard at this post. The last time I visited my (former) OB, he and I were in the middle of a difference of opinion on the proper way to measure blood pressure. Specifically, whether you'll get a falsely low reading if you lie the patient on her left side and take the measurement on the right arm while it's above the heart.

My multiple references were from Pubmed and from the citations those articles listed. His? A combination of Wikipedia and "I've been doing it that way for 20 years and I'm not going to change now." Hence the *former* OB part. :)

totally agree with Anonymous about directing people to reputable web sites (like veterinarypartner.com in our line of work). It does help me when clients use sites like this to research things like feline diabetes, which is too complicated to fully explain in a 20 minute appointment (and subsequent phone calls).

personal fave was when a client brought me a print out on eosinophilic granulomas in cats, which she thought her cat might have based on her consult with Dr. Google. Turns out that we diagnosed her cat with that years ago (listed every year in the medical record) - and had been doing the exact treatment listed on the website. way to pay attention, lady.

I also HATE it when patients read the inserts that come with the medications....they don't realize that if someone in the research group had, we'll say abdominal discomfort, (even though it could very well have been the tacos he ate for dinner) that they have to list it as a POSSIBLE side effect.

I once had a patient receive a new pacemaker implant, she went home and started reading the education book that she was sent home with and called the office stating (for real, no joke) "I felt fine until I started reading my pacemaker book" and then began reading me the whole list of "things to look out for" , all of which she claimed she had. The docs respone? "Tell her to quit reading the book, she'll be fine" and guess what? She was....

Anonymous June 21, 2011 7:55 PM - you're right, you ARE that pain-in-the-butt patient. Can't stand it when lay people think they know better than a medical professional who has devoted his/her life to their trade. As long as the blood pressure is taken the SAME way every time, the doctor will have an accurate variance to go by.

Same thing with scales in different offices. It doesn't matter that your PCP scale says you weigh 130 and ours says 135. If you come in and weigh 140 the next time then you will have gained 5 lbs on your PCPs scale too, regardless of the actual number shown, the rate of change is what matters

Damn, that sure is a handsome frackin' yak. Is that Mount Fuji in the background? If so, this must be the rare Yakitori breed, raised by Buddhist monks to ring temple bells with their horns. I looked them up on Google and found out that the poor bastards are inbred and suffer from spavin, bloat, horn-and-mouth disease, lumpy jaw (you can see that in the photo), warts, and maybe anthrax, though I think they were just pulling my leg with that one. It also said the Yakitori was good eatin', which struck me as kind of insensitive, but that's Google for you.

The patients you have must be smarter than me. Whenever I find a reputable site, I don't what the hell they're on about. That's how I make the leap that they _are_ reputable: i.e., if the doctor tests you and your glob-glob is at 5% when at a boil, you're f-ed. Many MDs cross-examine your balance of swing-cells for a ditty-full on the jukebox, to eliminate contraindication of flat-footedness... (eyes roll back in my head) where's that little "x" button, and where's my doctor's number?

You won't convince them not to use the internet, but you can influence where they get their information. Take a look at Medline (run by the National Library of Medicine). It is extremely well put together, accurate, mainstream, in understandable language, and supports the doctor-patient relationship as the path to recovery.

Beautifully constructed rant.Should be reposted on every 'Med for Dudes' website.Actually, I thought the nice photo was of Big Phil, just to show that there are no hard feelings, (altho' agree horns look kinda sharp!), between professionals....

I was just having this conversation with my own doctor out of pure frusteration the other day. I have uric acid kidney stones and uric acid stones do NOT show up on CT scans due to their density. (unless they are insanely huge) As a result, when I go to the ER with a stone, I often get labeled a hypochondriac and/or drug seeker. Very frusterating. And I've had over 70stones in six years, so I know what they feel like. Pretty unmistakable pain.

So often, doctor's play God. (To the best I can tell from reading your blog, Dr. Grumpy, you do not do that. Thank you!) They want you to educate yourself because if you don't, you must not care about your own health. BUT if you educate yourself, then you get poo-poo'ed and told you're not doctor and couldn't possibly know what you're talking about.

Now, this is just my own personal example. And I'm not dumping on all ER doctors. There are some gems out there but they are few and far between. I go in there educated and get called a drug seeker. Really doesn't seem fair.

And for the record, I did not learn that from google. I learned that from one of the top rated nephrologists in Louisiana. But you can bet your bottom dollar that I printed that same information off google and now carry it in my purse, show it to ER doctors and beg them to look it up for themselves.

In response to:"Hey Anon, 6/22 12:09 AM -- that was the PROBLEM. His nurses all take it differently and he's the only one who does it that way. Jackass. June 23, 2011 7:29 PM"

If you actually READ the post that was referenced, there was not even a mention of nurses and the doctor taking it differently. Pain in the butt patients just like to complain about everything just for the sake of argument...

Welcome to my whining!

This blog is entirely for entertainment purposes. All posts about patients may be fictional, or be my experience, or were submitted by a reader, or any combination of the above. Factual statements may or may not be accurate.

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